Not long ago, caregiving responsibilities were general- ly short-term. A parent, elderly relative or spouse who had a stroke or heart failure, wouldn’t be expected to linger more than a few years, and a sibling born with
special needs often wouldn’t live much past young adulthood. But
as treatment of serious or life-threatening medical conditions has
steadily improved, the number of years that caregivers can expect
to carry out their responsibilities has steadily increased.

In some cases, the caregiving role may last a lifetime, or beyond. “Inherited” caregiving that is forced on someone is akin to
“an offer you can’t refuse” — for instance, a dying father asking
a child to “Take care of Mom for me.” It’s only natural to expect
a child to pick up where you leave off, but experts say that you
shouldn’t automatically assume that he or she will.

WHY ME?

Jo Ann Simons, MSW, President/CEO of Cardinal Cushing Center,a Boston-area complex that provides schools, vocational trainingand housing for people with special needs, has an adult son withDown syndrome. Her son was born with Tetralogy of Fallot, a heartproblem related to Down, in which blood flow from the right ven-tricle of the heart to the lungs is restricted and a hole between theventricles allows deoxygenated blood from the right ventricle toenter the left ventricle. While Simons always expected her daugh-ter, who is now married, to be involved in her brother’s care, “Inever expected her to be his caregiver. I didn’t want her to go intoher adult life with that expectation.”Simons is being realistic. “Assuming won’t make it so,” says

“Besides, do you really want a reluctant caregiver?”

Some caregivers never get around to discussing a transitionplan with their families, because they don’t want anyone to feelburdened. “But if you don’t prepare them, you’re creating a burdenanyway,” says David Tolleson, executive director of the NationalDown Syndrome Congress Center (NDSC) in Atlanta.